22 Years of Trail Mix

I’m not a trail mix fan. Never have been. I still only tolerate raisins and just started showing enthusiasm for dried fruit a couple of years ago. I prefer my snacks separated into their own bowls. But the last 22 years are a trail mix of emotions and memories for me. And for all the ways and times my mind, body and spirit have been thrown into chaos since Carly was born on this day in 1998, I’m profoundly grateful for the rich texture and depth of flavor she brings to our collective lives.

Carly was diagnosed with Angelman Syndrome at two-and-a-half years old.

Carly is a woman who will test the limits of your wits and then move in to give the most generous and satisfying hug you’ve ever received. Her smile lights up a room. Her grin assures you there is much on her mind. Her laughter is infectious. Her high-decibel scream warrants ear protection. When she’s hurting, she’s a puzzle to help. When she’s aggravated, she’s strong as a horse. When she has energy to burn, she’ll use every inch of her small frame to knock you down and wrestle on the rug. When there’s food around, her arms seem many and long. Forever curious, even nosey at times, she’s been affectionately called a “seizer of opportunity!” She’s a sneaky rascal and fiercely stubborn. That curiosity and energy serve her well. A dance party with Carly finishes out any day perfectly. She pours music and praise from her soul. I have huge respect for her perseverance. She’s exploded my own faith and expectations on a number of occasions. For all the times we have to ask her to “just wait” while using a full body block to keep her from tearing into something or knocking something down, I don’t know anyone who would be so patient as she is.

We’re celebrating Carly’s 22nd birthday today. Larry and I were married at 22 so this number throws another few layers of nostalgia and emotion to all the feels. We had an epic dance party that night. We’re going to have another one tonight with all three of our incredible daughters and a bunch of other loved ones. They will join us virtually on something called Zoom. Yes, it’s an epic year, isn’t it?

When I shake the bowl of my feelings today, the ones that quickly rise to the surface are pride, gratitude, hope and joy.

Happy birthday, Carly! We’ll try to give you gifts you love. But, truly, YOU ARE THE GIFT.

1 Thessalonians 3:9
How we thank God for you!
Because of you we have great joy as we enter God’s presence. 



NOTE: Carly’s oldest sister is the one helping Carly make trail mix in the featured photo. Rest assured, that is a sweet moment I was happy to watch them have together. But I had no interest at all in eating the snack with them. Even without the raisins, I’m not interested, thanks. 🙂

One Father’s Desperation Holds Urgent Lesson for Us All

These comments from July 25, 2015 warrant reposting today.

The Angelman Syndrome community worldwide has been reeling this week — experiencing a horrifying, heartbreaking loss. Never before has my passion been greater that caregivers need support, encouragement, a place for resonance, an adequate rhythm of respite and the kind of hope and strength that only Jesus Christ can give. 

Take a moment to read/watch the full news story (July 23, 2015). Click here: Facing changes to the respite care situation for his 16 year old son, a father took his son to an area park and killed him” and then killed himself.

I’ll never be able to thank enough the many people that have poured into our family so that we can thrive amidst the 24/7 weight of “extreme caregiving.” Some seasons have been better than others but there’s no denying that the way people have come alongside to support us is remarkable. (It should not be remarkable. It should be commonplace for all of us to have enough compassion and margin in our lives to reach out to others who are so stretched.) 

While I can’t fathom taking the kind of action this dad took, Larry and I (as well as our oldest children Alex and Erin) all know too well the kind of desperation that can be felt behind closed doors when things like difficult behaviors, seizures, diaper catastrophes, cyclic reflux vomiting or sleep deprivation have taken us to our wits end. My heart aches and a sense of nausea wells in me when I consider so many friends who struggle daily with deep depression and/or sense of overwhelming loneliness/isolation caring for a loved one. 

Our culture doesn’t value caregivers enough, doesn’t pay respite staff enough (it’s extraordinarily difficult even to find people willing to work this type of job at ANY rate of pay), doesn’t encourage enough. Yet there are shining examples of progress. For example, the heart behind Caroline’s Cart and practical value it is bringing to families is like a hug from God. 

We must pray for the reality of this need for community and outreach to sink in and fast. May all of us to value more highly our opportunities to encourage one another, lead lifestyles that prioritize time to support a weary friend and have courage to ask for help when we’re struggling. May we create churches that go beyond just being welcoming places to becoming places that truly ENGAGE with these families, do more than just “be nice” and actually figure out how to carry another’s burden. 

Lord, help us all. 


The Wonder of God’s Christmas Presence (Part 3)

This is the final installment in a series of posts meditating on Immanuel — God with us.  Let’s continue worshipping together by thanking God for revealing Himself to us and by remembering how very near and accessible He is.


I have loved re-reading the experiences of the Israelites as the Christmas season comes around again. Not only does it fascinate and reassure me to “connect the dots” of covenant love and the fulfillment of Biblical prophecies, but I personally relate to the Israelite’s situation on a few levels. 


It is encouraging to me remembering that just as God’s presence led those freed slaves through a desert to the Promised Land, He is with me through times when I feel trapped in my circumstances or stuck in a wilderness. While God is moving me toward my Promised Land, the Holy Spirit dwells within me to guide me, inspire me, empower me, comfort me, advocate for me, equip me, protect me, reassure me when I’m discouraged, forgive me when I doubt Him, give me grace when I grow impatient and give me a restful peace when I feel frantic and overwhelmed.


I appreciate that the same promises God made to the Israelites remain true for me. And I understand those promises even more clearly now because Jesus’ presence brings new layers of enlightenment to what is happening then and now from the broader Kingdom perspective. 


How does God teach or encourage you with these verses about His presence today?

Exodus 25:21-22And you shall put the mercy seat on the top of the ark, and in the ark you shall put the testimony that I shall give you. There I will meet with you, and from above the mercy seat, from between the two cherubim that are on the ark of the testimony, I will speak with you about all that I will give you in commandment for the people of Israel.  

1 Corinthians 3:16 Do you not know that you are God’s temple and that God’s Spirit dwells in you? 

Colossians 1:26-28  The mystery hidden for ages and generations but now revealed to his saints. To them God chose to make known how great among the Gentiles are the riches of the glory of this mystery, which is Christ in you, the hope of glory. Him we proclaim, warning everyone and teaching everyone with all wisdom, that we may present everyone mature in Christ. 

John 17:20-22  [Jesus said,]“I do not ask for these only, but also for those who will believe in me through their word, that they may all be one, just as you, Father, are in me, and I in you, that they also may be in us, so that the world may believe that you have sent me. The glory that you have given me I have given to them, that they may be one even as we are one. 

Hebrews 10:19-24 19 Therefore, brothers, since we have confidence to enter the holy places by the blood of Jesus, by the new and living way that he opened for us through the curtain, that is, through his flesh, and since we have a great priest over the house of God, let us draw near with a true heart in full assurance of faith, with our hearts sprinkled clean from an evil conscience and our bodies washed with pure water. Let us hold fast the confession of our hope without wavering, for he who promised is faithful.

Luke 2:10 But the angel said to them, “Do not be afraid. I bring you good news that will cause great joy for all the people.  Today in the town of David a Savior has been born to you; he is the Messiah, the Lord.   

Colossians 2:9  For in Christ all the fullness of the Deity lives in bodily form. 

Romans 8:11  And if the Spirit of him who raised Jsus from the dead is living in you, he who raised Christ from the dead will also give life to your mortal bodies because of his Spirit who lives in you. 

1 Corinthians 1:9  God is faithful, who has called you into fellowship with his Son, Jesus Christ our Lord. 

Ephesians 3:12 Because of Christ and our faith in him, we can now come boldly and confidently into God’s presence. 

What are learning or embracing about the wonder and fullness of Jesus’ presence as the Christmas season arrives?

Encourage someone this weekend by sharing an answer to this question. Also, consider encouraging me and others here by telling about your experience in the comments below or by writing to me at lisa@walkrightin.org

The Wonder of God’s Christmas Presence (Part 2)

Today continues a three-part series of Christmas season posts thanking God for revealing Himself to us in Jesus. 


We’ve had a stretching fall at our house being extremely short-staffed with respite/caregiving support. For a few reasons (some known and some unknown), we’ve had more difficulty than ever staffing PCA (personal care assistance) positions that opened up this summer when most of our helpers went off to college. My husband does some traveling for work also, so I’ve spent more time by myself with Carly (who is non-verbal). I’ve been feeling isolated and the physicality of her care has taken a toll on my body. Between Carly and me, we’ve spent far too many hours in physician clinics and physical therapy offices this fall. It’s frustrating to give away precious hours to appointments like this when I might spend them writing, Christmas shopping or at lunch with a friend. Knowing that God remains with me and for me stirs my courage and helps me persevere.

God has been revealing His presence among us in various ways since the creation of the universe. During the Christmas season, we remember and celebrate how very near, available and accessible He is.  Since Christmas is the celebration of God incarnate — God made flesh in the person of Jesus Christ — let’s worship reflecting on ways God has been expressing His presence to us throughout history and creation.

Psalm 19:1  The heavens declare the glory of God, and the sky above proclaims his handiwork. 

Exodus 13:20-21   And the Lord went before them by day in a pillar of cloud to lead them along the way, and by night in a pillar of fire to give them light, that they might travel by day and by night. The pillar of cloud by day and the pillar of fire by night did not depart from before the people. 

Exodus 14:24  And in the morning watch the Lord in the pillar of fire and of cloud looked down on the Egyptian forces and threw the Egyptian forces into a panic. 

Exodus 40:35-38  And Moses was not able to enter the tent of meeting because the cloud settled on it, and the glory of the Lord filled the tabernacle. Throughout all their journeys, whenever the cloud was taken up from over the tabernacle, the people of Israel would set out. But if the cloud was not taken up, then they did not set out till the day that it was taken up. For the cloud of the Lord was on the tabernacle by day, and fire was in it by night, in the sight of all the house of Israel throughout all their journeys. 

John 1:9 That was the true Light which gives light to every man coming into the world.  

Colossians 1:22 He has now reconciled in his body of flesh by his death, in order to present you holy and blameless and above reproach before him. 

John 10:9-10  I am the door. If anyone enters by me, he will be saved and will go in and out and find pasture. 

John 15:4  Abide in me, and I in you. As the branch cannot bear fruit by itself, unless it abides in the vine, neither can you, unless you abide in me. 

Revelation 21:1-3  Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and the sea was no more. And I saw the holy city, new Jerusalem, coming down out of heaven from God, prepared as a bride adorned for her husband. And I heard a loud voice from the throne saying, “Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God.  

Psalm 16:7-8  I bless the Lord who gives me counsel;
 in the night also my heart instructs me.  I have set the Lord always before me;
 because he is at my right hand, I shall not be shaken.

 
How do YOU recognize that God is near to you?  

Tell us how Immanuel is revealing Himself to you recently. Share in the comments below or write me at lisa@walkrightin.org.  


The Wonder of God’s Christmas Presence (Part 1)

I’m coming into this Christmas season wearier than usual on the caregiving front and wrestling a bit with fears about the future for our 16 year old daughter who has Angelman Syndrome.  My life, like yours, is complicated and sometimes scary.  I can’t imagine doing this life without the confidence that God is always near, holy, compassionate, powerful and sufficient for all our needs. Despite that assurance, I still struggle too often between deep gratitude for His presence and longing for a greater sense of it.


How about you? Do you sometimes wonder what God is up to in your circumstances? Have you ever fought off feelings of abandonment and asked God to show you who He is in fresh and tangible ways? Although I see evidence of God, His love and His power every day, there are still areas in my life where I am waiting to more fully understand and see Him.


During this Christmas season, I invite you to join me in asking God to remind us and refresh us in the Truth of Who He is, how He keeps moving toward us and how He makes it a priority to be available with all of his compassion and authority.  


Today begins a short series of posts meditating on Immanuel — God with us.  Let us worship together by thanking God for revealing Himself to us and by remembering how very near and accessible He is.

Matthew 1:23“Behold, the virgin shall conceive and bear a son, and they shall call his name Immanuel” (which means, God with us). 

Exodus 25:8And let them make me a sanctuary, that I may dwell in their midst. 

John 1:14And the Word became flesh and dwelt among us, and we have seen his glory, glory as of the only Son from the Father, full of grace and truth. 

Ephesians 2:19-22So then you are no longer strangers and aliens, but you are fellow citizens with the saints and members of the household of God, built on the foundation of the apostles and prophets, Christ Jesus himself being the cornerstone, in whom the whole structure, being joined together, grows into a holy temple in the Lord. In him you also are being built together into a dwelling place for God by the Spirit. 

Psalm 139:7-8Where shall I go from your Spirit? Or where shall I flee from your presence? If I ascend to heaven, you are there.If I make my bed in Sheol, you are there!If I take the wings of the morning and dwell in the uttermost parts of the sea, even there your hand shall lead me and your right hand shall hold me.

What are YOU learning about the presence of God in your life today…in this generation, during this holiday season, on this particular day in history or in this particular season of your life?  

Share with a friend, family member, neighbor, co-worker or even stranger. Tell us in the comments below or write me at lisa@walkrightin.org.  Your encounters with God encourage others and honor God.


Andrea’s Glory Story

We have all done things we’ve regretted. But have you ever needed a completely changed life? Today, my friend Andrea is sharing a memory about a time when she encountered God and it became a turning point for her.  Together we’re praying that her story gives you confidence in God and courage to run toward Him, no matter how hopeless or unworthy you may feel.  


See that little corner parking spot on the left? Five years ago, I drove under the influence of alcohol in the middle of winter and ended up in that little corner at 1:00 am. For the most part, I don’t remember driving (at least 15 miles). I crashed my car into a snowbank. Then in my attempt to get out, I ruined the transmission. Soon after I got stuck, my phone died. It was freezing and the night was a blur to me. 


For three hours, I sat in the car (no car heat for most of the time) and honked my horn, waiting for someone to get me. I was in a rough part of the inner city and too scared to get out to try looking for people to help. A police officer eventually came and brought me to the Police Station. 

I will never forget how kind she was to me. Most would say I deserved jail time or something of that sort.  I think God knew that what I needed was someone to just talk to me and love me in my mess. I was so young but had the capacity for these kind of crazy stupid decisions. That officer talked to me and processed with me. 

Maybe she broke all the rules. I’m not sure. What I do know is that the moment she had me call my mom to come and get me, I was already at the pit and needed Mercy more than anything. Anyway, she let me go. No charge.

Because of God’s grace, I didn’t hit anyone while driving drunk. I made it out safe in the middle of the night in North Minneapolis by myself. And I didn’t even get sick from the cold! I still get freaked out—in a good way—about this story.  I don’t know every reason for why I didn’t get penalized, killed in an accident or something else horrific, but I am thankful, and amazed. 

I drive by this spot almost everyday on my way to school nowadays…and I smile. I smile at that young girl who had a Perfect Father smiling at her and just WAITING for her to come home to His embrace. A couple of years later I did, and now I barely recognize that person. I am so thankful that I can look these horrible memories in the eye and DECLARE that these moments didn’t have the final word. Jesus came and made me beautiful. And now that’s my story.

Hebrews 10:22-23 (NLT)Let us go right into the presence of God with sincere hearts fully trusting him. For our guilty consciences have been sprinkled with Christ’s blood to make us clean, and our bodies have been washed with pure water.  Let us hold tightly without wavering to the hope we affirm, for God can be trusted to keep his promise.  


The Little Red Chair


‘Tis is the season of transition to summer routines. School and church activities like Bible studies, small groups and children’s programs are wrapping up.  It’s a perfect time of year to reflect on those who have had influence on our faith.  There are official “volunteer recognition” parties and fellowship lunches, gift cards given and Hallmark cards signed.   Whether our expressions of gratitude are official or spontaneous, they are important and powerful encouragement to volunteers who lead Bible studies, teach Sunday School, hold babies in the nursery, serve on worship teams, facilitate small groups, preach and inspire, make coffee, maintain our church buildings, be a buddy to a child with special needs, make meals for families when someone is hospitalized, speak or write words or encouragement, mentor youth, lead our congregations, administrate our offices and pray faithfully on our prayer chains.  The list of those who could be thanked and how we might do that goes on and on.  

Rhonda Roe and her Bible study friends recently found a creative way to thank their Bible study leader, Jan Christofferson. They have so valued the way Jan teaches and inspires them. I want to thank Rhonda for sharing today’s story and poem reminding us to give thanks and inspiring us share our Glory Stories of how we are personally encountering the Living God in His precious presence, power and goodness.

My Bible study leader, Jan Christofferson, often refers to what she learned in Sunday school as a small child.  She tells us about sitting in little red chairs and learning simple truths about Jesus and stories of faith. 

I have often thought how neat it would be to give Jan a little red wooden chair as a reminder of those special days in Sunday school.  This year I was able to make that dream a reality.  I found a small wooden chair at an antique store and purchased it.  My friend, Karen, painted it red and wrote a poem to give to Jan.  We recently gave it to Jan at our end-of-the-year brunch. 

I hope this story and the poem inspire you to share your faith with the children in your lives.  You never know if one of them will grow up to have a servant heart and a desire to lead a Bible study.

The Little Red Chair
by Karen Johnson
A little red chair, so tiny and sweet, 
with paint a bit chipped and wear from small feet. 
All week in the dark and lined up on the wall, 
but oh! Sunday mornings, that changes it all!
All proud in a circle, we sit in a state, 
for very small people to be quiet and to wait, 
for stories and singing, and maybe a treat, 
for words about Jesus, and God’s love so sweet.
A little red chair, a Sunday in church,
a small little girl using it for a perch. 
A love for our Lord, a kindness of heart, 
like most great achievements, had a small start.
A little red chair, now beat up and worn, 
abandoned, forgotten—but what of it born? 
A wee little child to hear and in turn, 
a life full of teaching so others might learn.
A little red chair, so cheerful and dear, 
with our thankful hearts we look at it here. 
A symbol for us, they make such a pair, 
our wonderful Jan and her little red chair!

Who might you thank today or this week? 
How could you do that in a way that is personally meaningful?

LORD GOD, thank you for putting people in my life who have pointed me toward You and helped me grasp my opportunity for relationship with you.  Thank you for using the stories I hear about how others are encountering You. Those stories re-assure me of your presence. They encourage me when I need to know someone else has walked in my shoes and found You to be faithful.  They spur me on when it’s hard to persevere.  They remind me that I have great value in your Kingdom.  Help me to hear what You have to say to me through friends, mentors, my spouse, my children and my parents.  Please help me to have a teachable spirit as well as a heart to serve and share how I see You at work in and around me.  I offer myself to you today (or recommit) to be used for Your unimaginable purposes.  Please bless the people I am thinking of now and minister to their needs as only You can.  I ask these things and give You my thanks in Jesus’ name. AMEN

Scott’s Glory Story

I want to thank Scott Price for allowing us to share his recent personal reflections for this week of Thanksgiving. Scott and his wife Laura have responded to a calling from God to adopt several children with special needs. Their daughter, Vicki, was able to return home last week after being hospitalized for 28 days with a life-threatening infection. Scott first shared this story on Vicki’s CaringBridge blog three weeks ago and it spoke volumes to me about the power and purposes of our sovereign God. It stirred me to marvel and give thanks to Him. I trust it will turn your eyes toward Jesus also.

A DELICATE BALANCE  by Scott Price 

Vicki is in somewhat of a pattern. As evening and night roll around, she likes to “party.”  Well, maybe party is an overstatement but when there are a lot of people in your room, that should qualify as a party.  (We do have one staff person that’s on a mission to get a disco ball in the room, but that’s another post). 

She tends to raise her temp and have a harder time breathing late in the evening and during the night.  That brings in the “party.”  With these things, she worries her doctors, so they draw labs, do respiratory treatments, alter medications and then she decides the party is over and goes back to sleep—about 5 a.m.  Last night was just such a “party.” 

As I ponder this journey, what I am most amazed by is how our bodies are in an extremely delicate internal balance a majority of the time.  Consider all of the things you don’t think about like breathing or your temperature.  Your body just doesit!  For me, it reinforces my faith in our Almighty God and the fact that He created us.  There’s just no way that this delicate internal balance we were given somehow arose out of a combo of gases, or from an evolutionary process, or whatever other theories have been concocted over the years.  A wise and awesome God thought everything through and came up with this amazing and wonderful design. 

What reinforces this great design is how we as nurses, doctors, other staff, and parents are trying desperately to keep Vicki in some sort of balance.  We’ve done a myriad of things with over a half dozen doctors, the lab, countless nurses, Laura, me, and a couple of PCAs observing, getting tests, attempting interventions, and of course praying to keep her scales level.  

Early on when we tried one thing, it tipped another thing out of balance.  She was on a seesaw for many days.  Now the seesaw still tips back and forth, but it is much less dramatic.  And it’s amazing how one little thing like raising the head of her bed at the wrong time or feeding her too fast can send the seesaw into wild swings. 

All of these things just circle me back to an amazing design by a God that really knew (and knows) what He’s doing.  He told us this was true in the book of Romans: 

“For since the creation of the world God’s invisible qualities—his eternal power and divine nature—have been clearly seen, being understood from what has been made, so that people are without excuse.” Romans 1:20 

This amazing balance that resides in each of us should cause us first to pause at how well it works but then second to realize that God made us and we need to thank Him for that.

Happy Thanksgiving, friends!
“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” Psalm 139:14

FINDING GLORY Wednesday

Thoughout history, God has asked his people to celebrate His presence among them and care for them. The Old Testament feasts celebrated God’s faithfulness and the Last Supper commemorates the new covenant we share with God through Christ’s shed blood. God knows our nature. We need to remember His faithfulness regularly so Jesus said, “Do this in remembrance of me” (Luke 22:19).

Consider today’s scripture and discussion questions as it relates to remembering God and declaring His presence so that others will know and remember Him also:

He said to the Israelites, “In the future when your descendants ask their parents, ‘What do these stones mean?’ tell them, ‘Israel crossed the Jordan on dry ground.’ For the LORD your God dried up the Jordan before you until you had crossed over. The LORD your God did to the Jordan what he had done to the Red Sea when he dried it up before us until we had crossed over. He did this so that all the peoples of the earth might know that the hand of the LORD is powerful and so that you might always fear the LORD your God.” Joshua 4:21-24

When the nation of Israel had finished crossing the Jordan River, the Lord told Joshua to construct a memorial. Why do you think God insisted on this?

Specifically, what might God want you to DO (like setting up a pile of stones) or SAY (share a Glory Story) so that people will know that God is very much alive, present and active among us and that the hand of the Lord is powerful?

If you are part of a past or current Finding Glory Group, please give us your feedback about what is going well, what could be better, and how God is working. Your comments help us develop and improve future resources. Please write us at larry@walkrightin.org or lisa@walkrightin.org.

These “Finding Glory Wednesdays” posts are an online discussion series based on the books Finding Glory in the Thorns and the companion Finding Glory in the Thorns: Group Discussion Guide by Larry and Lisa Jamieson. For more information about Finding Glory Groups, visit http://www.findingglory.com/findingglorygrou.html.

FINDING GLORY Wednesday

There is an undeniable interconnection between joy and thankfulness because that’s the way God designed it to be. May God use today’s scriptures and discussion questions to enlighten us and show the way toward greater joy.

A cheerful heart is good medicine, but a crushed spirit dries up the bones. Proverbs 17:22

Be joyful always; pray continually, give thanks in all circumstances, for this is God’s will for you in Christ Jesus. 1 Thessalonians 5:28

What practical things can you do to cultivate a grateful heart before God?

These “Finding Glory Wednesdays” posts are an online discussion series based on the books Finding Glory in the Thorns and the companion Finding Glory in the Thorns: Group Discussion Guide by Larry and Lisa Jamieson. For more information about Finding Glory Groups, visit http://www.findingglory.com/findingglorygrou.html.